I want to bump this thread and add my thoughts rather than start a new post, hoping Dr. Diana will weigh in. I am from the MCAS world and have been taking high dose hydroxyzine and 4x daily cromolyn for a few years mainly for helping chronic headaches and facial numbness. My other triggers are pretty well defined (medications and foods) and managed just by avoiding them. At first the hydroxyzine was a miracle and the headaches and numbness were gone, but the symptoms slowly returned. I added the cromolyn a year? or so later, and again it helped at first, but then I had the same issue after a few months that Dr. Diana describes in the videos: I absolutely hit the wall and I thought I was going to drop dead (not exaggerating). My functional doc ran new adrenal saliva tests and I was critically low, so started daily hydrocortisone which helped the energy but I immediately gained 25 lbs and the headaches are as bad as ever (suspect a csf leak, still looking). After seeing the latest videos, I suspect that the MCAS meds had blocked too much acetylcholine which whacked my HPA axis causing the cortisol issue. The hydrocortisone is treating the symptom, but not the source, and I’d rather not have to stay on it. I also have autoimmune hypothyroid and have had exercise induced headaches for at least 20 years, so my issues could be very long-standing. I likely have EDS or chronic hypermobile, but not yet diagnosed.
My question is this: How do we find the balance between histamine blocking meds needed for MCAS which happen to block acetylcholine, and the necessary amount of acetylcholine for the rest of our systems to continue to function? Will increasing acetylcholine reduce the need for histamine blockers?
Also, is there any specific treatment for enlarged internal jugular vein that starts this whole cascade? What imaging should I request to look for this?